Insight & Growth    
Feature Article  (from National Autistic Society)

Anxiety in adults with an autism

spectrum disorder

 

Here we tell you about anxiety in adults with an autism spectrum disorder (ASD). We

explain how anxiety affects someone psychologically and physically. We also tell you about the different ways to help manage anxiety, from keeping a diary to learning relaxation techniques and getting support from others in a similar situation.

 

Anxiety in someone with an ASD

 

Anxiety is common in people with an ASD. It can happen for a range of reasons and people can vary in their ability to cope with it. Anxiety can affect both the mind and the body, and produce a range of symptoms. The psychological and physical symptoms of anxiety are closely linked and so can lead to a vicious cycle that can be difficult to break. 

 

The psychological symptoms of anxiety are:

- easily losing patience

- difficulty concentrating

- thinking constantly about the worst outcome

- difficulty sleeping

- depression

- becoming preoccupied with or obsessive about one subject.

 

Its physical symptoms include:

- excessive thirst

- stomach upsets

- loose bowel movements

- frequent urinating (going to the loo)

- periods of intensely pounding heart

- periods of having gas- 

- muscle aches

- headaches

- dizziness

- pins and needles

- tremors.

 

If you do experience any of these symptoms, it is important to also get medical advice to

rule out other medical conditions.

 

Understanding anxiety

 

Emotions are abstract. To understand emotion you need an imagination. One of the areas of difficulty for people with an ASD is not being to imagine things so understanding emotions can be difficult for them. People with high-functioning autism may understand some emotions and recognise the feelings that are associated with them. By helping someone to understand anxiety, you can help them to manage it better.

Resources such as those sold by Incentive Plus (see Further information and contact details) as well as the Autism Research Centres CD ROM, Mind reading (available from NAS publications; contact details below), can help teach someone with an ASD about emotions.

 

Strategies for managing anxiety

 

Once someone understands anxiety and has identified the things and situations that make

them anxious, they can then take steps to cope with the anxiety. If you are looking after

someone with an ASD, try and be aware of what makes them anxious and how best to help them manage certain behaviours.

 

Keep a diary

 

To help someone with an ASD understand anxiety, get them to understand the symptoms

they display when they are anxious and to look at the causes of their anxiety. Keeping a

diary in which they write about certain situations and how these make them feel may help

them to understand their anxiety and manage it better. Use the diary also to think about the physical changes linked to anxiety. Someone with an ASD often retreats into their particular interest if they are anxious about something use the

diary to monitor this as well:

 

Time and date Situation How I felt at the time

 

On a scale of 1 to 10, how anxious did I feel?

 

Meltdown prevention plan

 

Create an anxiety plan when someone with an ASD is feeling positive about things. An

anxiety plan is a list of things and situations that cause anxiety as well as solutions and

strategies they can use to help them manage their anxiety levels. The plan can be adapted, depending upon how well someone understands anxiety:

 

Situation Symptoms of anxiety Solution

 

Going on the bus. Hearts beats fast; sweat and feel sick.

Have stress ball in pocket. Squeeze the ball and take deep breaths. Listen to music.

 

Relaxation techniques

 

Someone with an ASD can find it very difficult to relax. Some people with an ASD have a

particular interest or activity they like to do because it helps them relax. If they use these to relax, it may help to build them into their daily routine. However, this interest or activity can itself be the source of behavioural difficulties at times, especially if they're unable to follow their interest or do the activity at a particular moment.

 

Some people may need to be left alone for short periods of the day to help them unwind.

Physical activity can also often help to manage anxiety and release tension. Using deep

breathing exercises to relax can be helpful as can activities such as yoga and Pilates, which both focus on breathing to relax. Use a visual timetable or write a list to help remind the person when they need to practice relaxation.

 

Any other activities that are pleasant and calming such as taking a bath, listening to relaxing music, aromatherapy, playing on a computer may also help reduce anxiety. Some people may find lights particularly soothing, especially those of a repetitive nature, such as spinning lights or bubble tubes.

 

You may need to encourage adults who are less able to take part in these activities so that they can enjoy their benefits. You can do this by explaining when and where they will do the activity and what it will involve. You may have to go along with the person at first and do short periods of activity to begin with.

 

Talking about anxiety

 

Some people with an ASD find direct confrontation difficult. They may therefore be unable to say they dont like certain things or situations, which will raise their anxiety levels. If they identify they are anxious, they could use a card system to let family or friends around them know how they are feeling. At first, you may need to tell them when to use the card and prompt them to use it when they do become anxious.

 

They could also carry a card around with them to remind themselves of what they need to

do if they start getting anxious. You could also give them a stress scale that they can use

whenever they find something particularly stressful. It may help them to buy our Autism Alert card (www.autism.org.uk/card), which is the size of a credit card. They can use the card to let members of the public know they have an ASD. The Autism Alert card is available from NAS publications (see contact details below).

 

Getting support from other people with an ASD

 

Personal accounts

 

It may help someone with an ASD to read the personal accounts of other people who also

have an ASD, and to see how they dealt with certain situations and managed any anxiety

they experienced. A number of people with an ASD have written personal accounts of their experiences: 

 

*Glass half empty, glass half full: how Asperger's syndrome has changed my life by Chris

Mitchell

 

*Making sense of the unfeasible: my life journey with Asperger syndrome by Mark Fleisher

 

*Thinking in pictures by Temple Grandin

 

We also produce a quarterly newsletter called Asperger United. It is written by people with

an ASD and includes personal accounts of having an ASD. Find out more at

www.autism.org.uk/aspergerunited

 

Online resources

 

The following online resources may be helpful to someone with an ASD as they are all aimed specifically at people with ASDs.

 

www.aspiesforfreedom.com

This site has a range of forums and a chat room, articles and lots of information and aims to help build the autism culture.

 

www.assupportgrouponline.co.uk

This website is run by Emma Thomson, who has an ASD. It has lots of information, including a blog.

 

www.autism.org.uk/peoplewithasd

This is on the NAS website and includes personal stories, thoughts, reflections, short films,

articles and lecture transcripts about life on the spectrum from people with ASDs.

 

www.inlv.demon.nl/irc.asperger

This website is for people with ASDs and its priority is to provide support.

 

www-users.cs.york.ac.uk/~alistair/survival

This website includes chapters from a book by Marc Segar, who had an ASD. Coping: A

Survival Guide for People with Asperger Syndrome has tips and advice on how to cope witha range of feelings, written from the perspective of someone with an ASD. For example, Marc not only talks about the unwritten rules about behaviour, but offers lots of tips and advice.

 

www.wrongplanet.net

This website is designed for individuals and parents of people with ASDs. It has a discussion forum, a section for articles, how-to guides and a chatroom for real-time communication.

 

Support groups

 

Going to a support group for people with ASDs means meeting other people with ASDs,

which can be helpful in some cases. Different support groups will offer different activities,

from going on outings to discussion groups about particular topics. Go to

www.autism.org.uk/directory for information about support groups in the UK. You can also

contact our Autism Helpline to help find various services.

 

Getting specialist help

 

Some people with an ASD are not able to identify their anxiety or to put in place strategies to manage it on their own. A specialist or a counsellor with experience of ASDs may be able to help them. Our Autism Helpline has details of counsellors and specialists in different areas. The following information sheets may also help and are available from our Autism Helpline:

 

Counselling

Counsellors and psychotherapists: a guide

Obsessions, repetitive behaviours and routines

Organisation, sequencing and prioritising

Change: preparing a person with autism spectrum disorder for change

Social skills: an introduction

Understanding behaviour

Visual supports.

 

Further information and contact details

Incentive Plus

6 Fernifield Farm

Little Horwood

Milton Keynes MK17 ORP

Tel: 0845 180 0140

www.incentiveplus.co.uk

Incentive Plus sells a range of resources to promote social and emotional skills.

 

Recommended reading

* Attwood, T. (1993). Why does Chris do that? Some suggestions regarding the cause and

management of the unusual behaviour of children and adults with autism and Asperger

syndrome. London: The National Autistic Society

* Attwood, T. (2006). The complete guide to Asperger's syndrome. London: The National

Autistic Society

Bourne, E. J. (2005). The anxiety and phobia workbook. USA: New Harbinger Publications

Cuomo, N. (2007). Integrated yoga - yoga with a sensory integrative approach. London:

Jessica Kingsley Publishers

* Ghaziuddin, M. (2005). Mental health aspects of autism and Asperger syndrome. London:

Jessica Kingsley Publishers

Greenberger, D. and Padesky, C. A. (1995). Mind over Mood: Change how you feel by

changing the way you think. London: The Guildford Press

* May, F. (2005). Understanding behaviour. London: The National Autistic Society

Mind. (2006). The Mind guide to relaxation. London: MIND

Trickett, S. (1997). Coping with anxiety and depression. London: Sheldon Press

Williams, D. (2003). Exposure anxiety - the invisible cage. An exploration of self-protection responses in the autism spectrum and beyond. London: Jessica Kingsley Publishers

* Wing, L. (2006). What's so special about autism? London: The National Autistic Society

 

*If an item is marked as available from NAS publications, please contact:

NAS Publications

Central Books Ltd

99 Wallis Road

London E9 5LN

Tel: +44 (0)845 458 9911

Fax: +44 (0)845 458 9912

Email: nas@centralbooks.com

Online orders: www.autism.org.uk/pubs

If you require further information please contact the NAS Autism Helpline

Tel: 0845 070 4004

autismhelpline@nas.org.uk